Tag: Patient Experience

Connecting and communicating consumer perspectives on cancer care in WA

 

Has cancer affected your life – currently or in the past? A desire to connect with others who have similar lived experiences is the drive behind the upcoming community conversation welcoming consumers affected by cancer in WA. Health consumers’, carers, family, and community are invited to join “Connecting and communicating consumer perspectives on cancer care in WA“.

Be part of the conversation to discuss progress on the 2020-25 WA Cancer Plan. Discuss opportunities for future consumer and community connections.

Date and time

About this event

The WA Cancer Plan guides cancer care in WA: find out about progress on the 2020-25 plan and discuss opportunities for future consumer and community connections

Health Consumers’ Council (HCC) WA and the Consumer and Community Involvement Program (CCIP) are hosting this community conversation for people with experience of cancer – either for themselves, or for a loved one.

In this session, consumer representative Susannah Morris, the HCC WA consumer representative in cancer involved in work relating to the development and now implementation of the WA State Cancer Plan, will give an update on work so far as background for the conversation. Cancer care is delivered in the states and so state plans provide important context that guides care and affects consumer experiences and outcomes. Unlike some other jurisdictions, WA does not have a readily identifiable network of cancer consumers: we are fragmented between our cancer types and our treating locations and so this community conversation provides a space for us to come together.

This will be an opportunity for attendees to discuss their interest in people with experience of cancer in WA connecting with each other in order to influence the scope, design and delivery of health services and health research in relation to cancer and survivorship.

(NB This information session is being hosted independently by HCC and the CCIP to provide an opportunity for people with experience of cancer to connect with each other and learn about work relating to cancer care and services in WA. This is not a Department of Health event.)

This conversation will be held online, via Zoom – details will be sent out in the week before the session.

 

About the organisers

We are (Health Consumers’ Council WA) an independent charity that exists to support and promote consumer, carer and community perspectives in the WA health system.

The Consumer and Community Involvement Program (CCI Program) is an activity of the Western Australian Health Translation Network (WAHTN). The CCI Program (CCIP) supports consumers, community members and researchers to work in partnership to make decisions about health research priorities, policy and practice with the aim of improving health outcomes and ensuring community involvement becomes standard practice.

BACKGROUND: Cancer Care and the WA Cancer Plan, launched 2020

The WA Cancer Plan was released in February 2020 setting out the next five years of strategy in relation to cancer services. This work was undertaken by the WA Department of Health, and the Health Consumers’ Council supported the project through running a community survey and developing consumer videos reflecting consumer patient journey experiences. A summary of survey results is available here. The launch event featured a moving and articulate presentation from Advisory Group member Susannah Morris, who ensured the consumer voice was at the heart of the plan as much as possible.

(An abridged version of Susannah’s speech is in Health Matters (pages 10-11: March 2020 issue) on the Health Consumers’ Council (WA) website, titled “A new plan for cancer
care in WA“)

REGISTER FOR THE COMMUNITY CONVERSATION HERE:

https://bit.ly/WA-Cancer-Plan-Community-Conversation-Consumer-Perspectives

(LinkedIn: for Dr Susannah Morris)

A wild reflection from digital health summit

 

With the Wild Health Summit in Melbourne 18 October 2022, we are inspired by the idea that digital health could improve the patient experience even while the services themselves are quite fragmented. We need to continue to champion consumer voices in this space – too often they can be an after-thought.

We asked one of our consumer representatives, Robert McCormack, if he has any key questions or reflections to bear in mind for this upcoming Wild Health Summit event, having recently attended as a HCC consumer representative at the Digital Health Institute Summit (Perth 2022) held in August at the Perth Convention and Exhibition Centre.

Q: What were your highlights that might be of interest to health consumers?

A: I met a number of healthcare and IT professionals but did not see another health consumer.  However in conversations with these professionals, several times they relayed personal experiences as either patients or as carers.  Nonetheless, there is a case to have more consumers at the table.

Q: With no other consumers, do you have any comment on that – i.e. would it be of interest to consumers in future? Should we be advocating for more consumer places?

A: the need to engage widely with all stakeholders was emphasised by the keynote speaker, and I am of the view that the patient/carer/consumer needs to be seen as the principal stakeholder.

Q: any comment you might have on the value of you being there with a consumer lens?

(Mr McCormack was generous to provide us with a report on his experience at Digital Health Institute Summit (Perth 2022), which is summarised, below…)

Some Key Observations

The participation of over 200 delegates suggests there is substantial interest across the State in the potential benefits that could be delivered from the implementation of a solid digital health strategy.

The delegates comprised a good cross-section of health professionals including nurses, pharmacists, physiotherapists, and general practitioners through to senior executives from WA Health, and IT professionals with only a few health consumers.

The opening address by Simon Millman, the Parliamentary Secretary to the Minister for Health; Mental Health suggests the Western Australian Government has some commitment to digital health as also evident in its budget commitment to the first phase of developing a digital health record.

In conversation, most delegates acknowledged that while there has been some useful progress in rolling out aspects of digital health, considerable work needs to be done to achieve substantial potential benefits. One speaker described the current progress as additive rather than transformative.

Dr Helen Bevan, the keynote speaker, emphasised, with reference to her experience in the English National Health Service, the need to engage fully across the widest net possible of stakeholders to gain acceptance for proposed change, and this engagement needs to be done in the formative stages.

She particularly emphasised the need to identify and engage the key players, the “super-connectors”, in informal networks as well as dealing with the formal networks.

I note this approach contrasts with the experience of many health consumers in that they are too often ignored locally in the early developmental phases of most healthcare projects.

I am of the view that consumers as the clients of healthcare should be the primary stakeholders consulted in any proposed development of initiatives.

The fragmentation of responsibility for health across federal and state governments and the delivery of services across multiple providers presents particular challenges in assembling fragmented data.  While the My Health Record potentially brings data together from a number of providers, the record for each patient is mainly incomplete and may not have up-to-date information.

Hospitals use a myriad of systems that don’t automatically share data although some progress is being made as evident in a presentation by staff from Fiona Stanley Hospital.

The development of artificial intelligence tools is seeing the improved diagnosis and management of healthcare.

For example (of the above), as evident in the Health in a Virtual Environment (HIVE) project at Royal Perth Hospital and research undertaken by the CSIRO in diabetic foot ulcer diagnosis and management.

The need to think beyond the current paradigms in healthcare delivery was highlighted in a presentation on delivering chemotherapy in the home by Lorna Cook Company Director & Co-Founder, View Health Chemo@home.

In a similar vein, it should be noted that COVID has caused a rethink on service delivery models which has seen, for example, the development of telehealth options and electronic prescriptions.

Digital health innovation has the potential to improve the patient experience in booking appointments, such as the Health Engine system developed by Dr Marcus Tan.  In contrast, while the WA Health Department has invested in developing the Manage My Care app and is working on further enhancements to this app, this system is currently of limited use in that not all outpatient appointments are recorded on this system and patients have no opportunity to choose appointment times.

The trade stalls were mainly commercial IT companies who have had experience in developing and implementing systems across healthcare systems.  We can expect some of these companies will have opportunities to roll out digital systems across the WA health service providers.  It will be interesting to see the extent pre-existing systems will be adopted and the degree of customisation of these systems to meet our requirements versus bespoke development of new systems.

Concluding Remarks

While there have been several useful developments in the digital health space,

to realise the substantial benefits of a comprehensive integrated digital health strategy will require wider engagement of the broadest possible group of stakeholders at the earliest stages of the project with a particular focus on consumers/patients as the primary stakeholders together with the substantial investment of resources and talent over a prolonged period.

The Health Consumers Council can potentially play a key role in shaping the digital future of healthcare delivery by providing a broad range of consumer insights required for the critical success of the digital health strategy.

(This article/report is courtesy of Robert McCormack, HCC consumer representative.)

CroakeyGO – Walking and talking for collaborative health content

Social journalism project Croakey is taking a unique approach to gathering consumer input on health with CroakeyGO. The project brings people together to walk and talk about health issues and to collaboratively produce social media and other editorial content.

In August, North Western Melbourne Primary Health Network (NWMPHN) supported a mental health CroakeyGO, #NavigatingHealth, following the footsteps of a patient journey through the mental health system. Consumer feedback gathered during the partnership project will help guide mental health commissioning and inform the PHN’s Regional Plan for mental health.

The event involved about 100 people from diverse backgrounds. The group stopped at four different locations: a public hospital ED, an Aboriginal health service, a community health service, and a general practice. It looked at the issues faced by different parts of the mental health system and how a person’s care journey is impacted by where they first seek care.

There were speakers at each stop, but importantly all participants were given the opportunity to be interviewed about their own issues and concerns. This was supplemented by hundreds of people engaged with the event and conversations via social media.

“First and foremost, we wanted to listen to our community about what they think is needed in our mental health system,” Mary-Anne Toy, NWMPHN Director of Strategic Relations, said.

“What was working well, what was not working, and how we could make the system fairer and better. We wanted to get as many perspectives as possible. We also wanted to share our work and approaches and build new connections so that we can work together to create better care for our community.”

NWMPHN recognised that collaborating with CroakeyGO would have the potential to have greater impact, reach and engagement than previous meetings or consultations.

“It went even better than we hoped. We had twice as many people as we’d calculated would turn up in real life. And people loved participating, from our own staff to consumers, carers, service providers and academics. From people who knew us to people who didn’t really know what a Primary Health Network was but turned up because they cared about our mental health system,” Ms Toy said.

“What surprised us was how much our own staff loved the event.  It reminded everyone that we’re all in it together and how important it is to get out ‘on the ground’.

“Listening to people at the four partner stops talk about what they did was illuminating – even for those of us working in the field, there’s so much we don’t know about the system and hearing people’s stories is always powerful and humbling.”

Victorian Aboriginal Health Service (VAHS), St Vincents Hospital, Drummong Strett Services and Carlton Family Medical photographed at Fitzroy on Thursday,01 August 2019 in Melbourne, Australia. (Norm Oorloff/1826 )

 

This article was originally published in Health Matters 

Life with a chronic health condition – what is the consumer experience?

For six months of 2017, HCC has worked with the WA Primary Health Alliance and Curtin University on a project to explore consumers’ experience of chronic disease and what kind of care they are seeking from the GP and community based services.

People living with chronic health conditions and a range of community-based health service providers came together at a forum on Friday 1st December 2017 to hear the outcomes of a focus group study conducted by Curtin University and Health Consumers’ Council in 2017.

The aim of the study was to better understand the current system of GP management of long term conditions, from the perspective of consumers. This information will be used as part of an overhaul of the primary care system being conducted by the WA Primary Health Alliance (WAPHA) in conjunction with GPs.

Forty six consumers were involved in the focus groups which met in Wanneroo, Midland, Armadale, Rockingham, Bunbury and Albany. They represented a range of ages, backgrounds and health conditions but agreed on many key points:

  • Consumers want a long term relationship with a GP who is a good listener and will work with them in partnership
  • Bulk billing and reduced up-front costs to care helps consumers to get the care they need
  • Chronic condition care plans are not well promoted and don’t deliver enough care – especially to people who have more than one conditions
  • There is a role for specialist “care coordinators” to support better management of different services
  • People with chronic health conditions should be treated differently within the GP system to people who only require occasional GP contact

You can view the summary of both the provider and consumer consultations here.

Kate Bullow, Project Co-ordinator.

Press Ganey – what’s it all about?

You may have heard about Press Ganey, the patient experience survey being implemented in Perth hospitals including Royal Perth, Bentley, Fiona Stanley, Sir Charles Gairdner and Osborne Park Hospitals. The survey is sent out to patients two weeks after they have been discharged home and seeks feedback on a range of different measures. The question was asked about how this ensures a diverse response, e.g. from Aboriginal and non English speaking patients.

At our most recent Consumer Advisory Council Roundtable, we had their CEO, Amanda Byers provide a presentation on how their survey works. For those who were unable to attend, a video of the presentation is available below. It is just under 45 minutes long. The powerpoint is available here, however it is well worth watching the video as it makes sense of the slides’ information.

The third slide has a useful reflection on the suffering that a patient will undergo when in hospital. It notes that there is suffering unavoidably associated with both diagnosis and treatment. The avoidable suffering caused through defects and care in service is where the Press Ganey survey focuses. Press Ganey also highlighted that it was a validated tool which means it has had psychometric testing to ensure a reliable result.

Once the survey results are returned to Press Ganey they are analysed and the reports provided to the hospital. This process can see about a three to six month delay between the healthcare episode and when the feedback is provided to the healthcare service. Some hospitals such as Royal Perth are also implementing questionnaires that Community Advisory Council members undertake with patients to ensure a quicker response when issues are identified. The presentation did highlight however that service improvement can be supported through Press Ganey surveys using the example of a large hospital in Asia which transformed their health service in nine months. Despite this health service’s initial concerns about how well this would work, their performance improved significantly.

Patient Experience Wrap Up Day Two

Aboriginal Patient Journey Panel Discussion

IMG_0458Day Two began with a Welcome to Country from Olman Walley, prior to the Aboriginal Patient Experience Panel. Panellists included WA Health’s Wendy Casey who is Director of Aboriginal Health Policy Directorate, Michelle Nelson-Cox, Chair of the Aboriginal Health Council of WA, Consumer Miranda Farmer and General Practitioner and Professor Paula Edgill. The panel was chaired by Glenn Pearson, Head of Aboriginal Research at Telethon Kids Institute. It was an interesting blend of the viewpoints of Government, the Aboriginal Community Controlled Health Sector, a frontline GP and an Aboriginal woman whose story highlights there is still some way to go.

Author Talk – Kate Ryder

Kate Ryder has written a book called An Insider’s Guide into Getting the Best out of the Health System. Kate is a Registered Nurse who lives and works in NSW. Her book was launched in early 2016 and covers many useful topics to support health consumers to have a safe health experience. You can find out more about her book here.

Lunch Box Session – Involving Consumers in Organisational Governance

HCC’s Pip Brennan, Steph Newell and Louise Ford facilitated this interactive session which reflects the importance of involving consumers at every level of the health service. Key definitions of governance were considered, and the fact that our National Safety and Quality in Health Service Standards one on governance, and two on partnering with consumers underpin all other standards. The audience was asked to provide examples of how consumer partnerships within the governance levels of organisations are occurring or can be planned to be strengthened. The session closed with key points to consider when involving culturally and linguistically diverse consumers in health service governance.

Panel Discussion – Measuring the Patient Experience

Outcomes Panel 2The Final Patient Experience Week panel discussion was on the key topic of how you measure the patient experience. Panellists, from left to right were; Lorraine Powell – Consumer, Karen Lennon – WA Health, Candice Patterson – WA Health, Melissa Vernon – WA Health Country Services, Todd Gogol – WA Health Royal Perth Hospital, Petrina Lawrence – Consumer and Carer, Learne Durrington – WA Primary Health Alliance, Anne Williams – Murdoch University. Missing from the picture is Patient Opinion’s Michael Greco who spoke during the discussion but had to leave to catch a plane. The panel discussion was filmed by West Link TV and includes final comments by Majok Wutchok.

Westlink is available to country viewers who receive their Free to Air TV via satellite on Channel 602 on the VAST service. The debate will air on
Monday, Wednesday and Saturdays at 10.30 and 3pm on these dates:
June 6,8,11,13,15,18,20,22,25,27,29.

Health Consumers Council Excellence Awards

Patient Experience Week events concluded with our Excellence Awards. For all the details about the winners and nominees, see this page.

Patient Experience Wrap-Up Day One

On Thursday 28th and Friday 29th April the Health Consumers’ Council hosted our inaugural Patient Experience Week (PXW) with a series of events at The Boulevard Centre in Floreat. We are excited to be finalising our new HCC Podcast of those events we were able to record, and in the meantime, here are some event highlights for you from day one of PXW.

The Welcome and Introduction

Olman Walley gave a Welcome to Country on both days, providing his own unique and gracious welcome in language and with music. His didgeridoo playing was evocative and on the second day, and veered off into rap. Sense of humour that one!

Pip Brennan presented on behalf of the HCC and thanked the sponsors Illuminance and Empower ICT who provided essential support for the event. Pip then spoke about how HCC supported consumers individually through advocacy and supported health reform through consumer representative training and sector support. The importance of supporting the health sector in working with Aboriginal as well as Culturally and Linguistically Diverse communities was highlighted. Pip also referenced the December 2015 Clinical Senate Debate on the Patient Experience. She particularly highlighted the four Recommendations from that debate which were endorsed and therefore WA Health has a mandate to ensure they are implemented. The Recommendations are:

Pip Podium 4

  1. WA Health should introduce a system-wide, consistently branded ‘Patient First’ program that drives the patient experience agenda and under which all key patient experience improvement programs are measured, with results publically available.
  2. In consultation with consumer and carer peak bodies:
    •A statewide definition of a great patient experience is developed that incorporates a value-based, patient-centered approach. WA Health, as system manager, is to ensure this is adopted by the whole of Health.
    •Patient experience tools are developed or selected for use that reflect the indicators that matter to patients.
  3. The Senate recommends that a consumer is appointed as a member of State Health Executive Forum (or its equivalent post legislative amendments to create Health Service boards).
  4. The Senate recommends Chief Executive Officers visibly and actively lead consumer partnership programs and have related Key Performance Indicators (KPIs) in their performance agreement with their boards.

To see the full presentation, click here.

The Director General

The Director General of WA Health formally opened the launch and stated WA Health’s commitment to patient care, patient safety and providing the best patient experience. He highlighted that it is essential to have an organisational culture where staff feel valued and respected, and patients are treated with dignity and respect. In order to achieve that, consumers must be involved in strategic processes that guide the planning, design and evaluation of health services. He referenced the December 2015 Clinical Senate Debate on Patient Experience  and highlighted WA Health’s commitment to developing a Compassionate Care initiative. Compassionate Care is about the way in which people relate to each other. This means the way staff treat each other as well as they way they treat patients. His powerpoint can be accessed by clicking here.

DG PodiumThe Director General closed with these statements:

  • The patient journey is unique to each person. Every interaction with patients and their families impacts on their experience.
  • We must transparently measure the patient experience.
  • Lessons learnt – through both positive and negative feedback – can be used to improve health services.
  • A system-wide definition of a great patient experience should be developed.
  • Consumers must be involved in the planning, design and evaluation of health services.
  • It is essential to have an organisational culture where staff feel valued and respected, and patients are treated with dignity and respect.
  • This starts with our behaviour and our values.

Dr Karen Luxford

 

We were then joined on Skype by Dr Karen Luxford, Director of the NSW’s Clinical Excellence Commission. The gremlins were with us at this point, so the Skype presentation didn’t record. After Patient Experience Week was over, Karen kindly agreed to be interviewed about the Clinical Excellence Commission, their Patient Experience Week events and why the patient experience movement is important. You can listen to that audio by clicking the link below:

The final presentation of the launch was by the irrepressible Jason Wolf, CEO of The Beryl Institute. The Beryl Institute is an international community of health professionals, consumer, carer and community members dedicated to improving patient experience in health care. His presentation was highly motivating, and can be watched by clicking the arrow below. Alternatively you can view his slide presentation here.

The Actors – Two Sides to the Patient Experience

Straight after the launch, Agents Improvocateurs took to the stage to enact a patient journey scenario, inspired by stories HCC hears from consumers who seek our advocacy assistance. In the scenario, a patient had been stung by a bee near her breast and attended the Emergency Department and was then put on a children’s ward where she endured hours of hunger, (children’s portion dinners) pain (failed insertion of a cannula to administer antiobiotics, then a reaction to those antibiotics) and being ignored. She was also confused and frightened by talk of a possible mastectomy in a discussion between two health professionals in a conversation in her hearing which excluded her. The audience offered suggestions for how things could be done differently and the scenario was played through again. It also explored the situation from the provider perspective – each interaction always has at least two people and in this one we explored the fears and humiliation of the nurse who had failed to insert the cannula. Alma Digweed from Bentley Community Advisory Council agreed to join the actors on the stage and was the star of the show.

Lunchbox Session – Organisational Approaches to Patient Experience

This diverse session included a presentation from Anita Deakin and Carmel Crock, in relation to the Emergency Medicines Events Register (EMER). This interesting and innovative tool is a change management mechanism in that in encourages both clinicians and consumers to report near misses and develop a culture which supports a learning approach to near misses to support a safer patient culture. The Powerpoint presentation is available here, and you can find out more about EMER here.

Next up was James Sherriff, General Manager of St John’s Ambulance and former paramedic. James’ presentation focused on the internal change that St Johns have actively sought within the organisation to ensure front line staff always have the patient at the centre of the care. You can view his Powerpoint here.

The session closed with HCC’s Dr Martin Whitely and Murdoch researcher Dr Norman Stomski describing a key research project they have been collaborating on. HCC provides individual advocacy for mental health consumers who are voluntary. HCC sought to better understand what the advocacy intervention meant for consumers whose patient journey was far from smooth. 60 de-identified individual advocacy cases were written up for research analysis. Martin and Norman’s joint presentation can be viewed here.

Workshop Session – Partnering for Patient Experience

The day concluded with a workshop facilitated by HCC’s Steph Newell. Presenting was Professor Anne Williams on her years of research and development of Patient Experience Tools – known as PEECE and PEECH. Helen Fernando from South Australia presented on the unique and effective Messenger Model that she has developed, and  a version of the concept runs at Flinders Medical Centre. The Messenger Model involves the consumer representative providing a conduit for information about health care needs and experiences to reach front-line staff during the episode of care. The feedback about what has gone well or otherwise alerts staff to issues that may be addressed whilst the patient and family are still in the care of the health professional team so that the patient experience can be transformed. Steph Newell explained the key factors of partnership – trust and common purpose. During the workshop session, audience members were encourage to view sections of this video on patient experience and consider the scenarios within the context of the tools discussed – PEECE, PEECH and the Messenger Model.

The Theme, The Crowd

We aligned with the international theme for 2016 Patient Experience – “Connecting for Patient Experience – We are ALL the Patient Experience”